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Not looking good for me but I'm not done fighting!

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

Got the results of last weeks PET.  Conclusions: Interval progression of disease with development of widespread bone metastases.  There are also multiple new liver metastatic lesions.  Right-sided pleural activity with large right pleural effusion compatible with pleural metastatic involvement.  Increased metastatic adenopathy in the mediastinum and right hilar regions.

I'm scheduled to start Halaven on Thursday, if my insurance approves it, and apparently it is given through an intravenous push over 2-5 minutes so I don't have to spend hours watching it drip.  I'm also being considered for a clinical research study being done in patients with HER2 negative metastatic breast cancer.  The study is to evaluate a new test called the PRO Onc Assay.  If this blood test comes back positive for HER2, even though past test have been negative, then I might benefit from HER2-targeted treatment.  I have to get the fluid drained from around my right lung again but my onc thinks the chemo might prevent it from returning this time.  I sure hope so. 

HUGS!!!

Jamie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Oh Jamie, I am so very sorry but perhaps Halaven will work.   The clinical research study sounds interesting.  I wish that I had words of comfort other than the distress I feel for what you are going through.  You a tough and I expected you to fight, what else can one do anyway.

Best,

Doris

 

 

camul's picture
camul
Posts: 2004
Joined: Dec 2010

Sorry you didn't get better news. It is really hard when you are following the treatments and doing all you can do and the beast just keeps going on its merry little way. I have only gotten reports like this, yet I have still managed to keep my fight going. It has been 32 months now and I am still fighting.
Hopefully it will come back her2+ wih this test, as I felt better on herceptin and it has only been while on the herceptin that the cancer seemed to move along at a slow pace!
Like Doris says, there is not much else for us to do.
I wish you all he best.
Hugs and prayers.
Carol

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Oh Jamie, I am so very sorry to hear this.  I am praying that you and the halaven kick the cancer to the curb.  Keep fighting!

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

I am sorry to hear that things are not going so well. I hope the Halaven works and you get good results. If you are able to get into the study it will probably be a good thing. I will keep you in my thoughts. Keep fighting!

Hugs,

Georgia

New Flower
Posts: 3917
Joined: Aug 2009

Dear Jamie,

I am very sorry, I am impressed by your fighting spirit. Hopefully your new treatment will work helping get everything under control.Her2+ status will provide additional options let's pray cancer has mutated knock it down completely.

Hugs

Lynn Smith
Posts: 1265
Joined: Mar 2011

Keep fighting.I know you want to beat this beast and you will.Like others said they've been fighting for months and  going to fight longer.Don't give up.Wishing you the best.

Thoughts and Prayers!!!!!

Lynn Smith

disneyfan2008
Posts: 5259
Joined: Oct 2010

Thinking of you...

Denise

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Jaime, I'm so sorry your news wasn't better.  The study sounds promising, please let us know what happens with that.

Hugs,

Linda

poodlelady
Posts: 3
Joined: May 2013

Hi Jamie

Sending you lots of love and hugs .

 

xxxxx

 

mollyz's picture
mollyz
Posts: 737
Joined: Sep 2010

You haven't gave up the fight,Im praying for you ,i hear  positive words from your Dr.in tnis so keep your positive attitude and remember it ain't over till God say its over,Fight Fight Fight 

 

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Jamie,

 

Ask you doctor about "talc pleurodesis".  They put in talc (like baby power) to seal the pleura so an effusion can't start up again.  Just a thought.  Thinking of you and sending positive thoughts.  Please keep us updated.

 

Sending gentle hugs,

 

Doris

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I think the talc pleurodesis will be the next step if the fluid comes back again.  I had the thoracentesis yesterday afternoon (long day...will write more later) and I am about to leave for my bloodwork and new chemo.  Hopefully I will feel like keeping my afternoon appointment to get my windshield replaced because for some reason it decided to crack and the crack grows bigger as I watch it (I know...don't watch it....but you can't help but watch it when you are driving along and it is happening right in front of you).  Please take care and I'll try to catch up later on how you are doing and if you got your chemo yesterday.

HUGS!!!

Jamie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

I remember watching a crack in my windshield grow and it kept growing till I finally brought it in.  My car is being fixed too.  Some sort of noise it makes at time when I go downhill for a full stop.  

My hematocrit rose enough to have my treatment.  My primary care has sent a note to my oncologist about the RBC.

Wishing you luck with your new treatment.

Hugs,

Doris

 

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

Doris:  I'm glad you were able to get your treatment.  I hope the side effects don't hit you too hard.  I also hope you are working on that destressing. 

I had my first Halaven treatment today.  So far no problems but I thought that after my very first Adriamycin and three days later I was sick as a dog.  I don't think this chemo is supposed to have that effect but we never really know how we will react...do we?  I will get another treatment next Thursday and then I'll have a week off.  I just hope it starts kicking the liver mets out at the very least.  They didn't draw blood for the clinical study today because they need more info on the size of my tumors before they can approve me for the study.  I would like that info myself so they better share that with me when they get it.  The only info I get these days is just a comparison of my newest PET to the previous one but it never mentions size anymore.  I feel like they get lazy with those reports.

I'm anxious to see the report about yesterday's thoracentesis.  The one I had done on April 16th had an orange colored fluid but yesterday's looked more like they accidentally drained my bladder or else I was full of beer (which I can't stand the taste of so ...... not possible and certainly not around my lung).  I wasn't expecting to have the procedure done so quickly but I got a call from the hospital about 9:45 am asking me if I could be there at 1:30.  I quickly did some grocery shopping and rushed home to take a shower before driving to the hospital.  I called my husband and asked him to pick me up at the hospital on his way home from work.  After the procedure I went to recovery for that horrible, long, boring 4-hour wait.  My husband brought me something to eat and then sat in that small plastic chair for at least two hours until I finally convinced him to squeeze in next to me in the bed.  It was almost 9:00 pm before they finally let me leave.  I am soooooo mad at those people because if they are going to insist that I can't drive myself home then they should at least provide more comfort for the person having to sit and wait with me.  Naturally, after waiting for 4 hours with no drugs left in my system I was more than able to drive so after the nurse wheeled me out to my husband's car and went back inside, he promptly drove me to where I parked my car and he drove home his preferred route and I drove home my preferred route.  I think what I hate the most about this stupid disease is that they keep forcing me to make someone else drive me home when I know I can drive myself.  They don't seem to understand or even care that if my husband or daughter have to take too much time off for me, they could lose their jobs.  Please don't fault me for saying this, but I would rather go ahead and die before that happens.  I guess my anger is taking over me now so I'll just finish this by saying I appreciate you all for taking the time to read my rant .

HUGS!!!

Jamie

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I got second dose of Halaven today before finding out that my port is leaking.  I get one week off from the chemo so I guess I'll be getting the port fixed or replaced before my next dose.  I had my second thoracentesis on May 1st but feels like I already need a third one.  I should find out the results of my chest x-ray tomorrow.  I wish they could fix the port and drain the fluid at the same time.  Why not?  I did not qualify for the PRO Onc Assay clinical study.  Apparently my tumors are not large enough.  I kind of decided that was a good thing.  Who wishes for larger tumors???  Anyway, thank you for taking time to read about my problems when you have so many problems of your own.  I found myself thinking about HootieGirl (KAT) a lot today.  She still inspires me because she refused to let cancer take away her love of life.

HUGS!!!

Jamie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

You can ask for a copy of all your reports when they mention them to you.  I try now not to bother Medical Records, so everytime they mention a test or this or that, I say "May I have a copy" and in minutes it's in my hands.

You need that talc procedure Jamie or a drain where you can pump it out yourself.  Like those tubes they put in to drain out body fluid after a masectomy.  This way you don't have to go through this over and over.

Ask how often they have had a leaks in the type of port they put in you.  They propably won't give you an answer unless you meet up with a very honest person.  

I am so sorry that you are on such a rough journey.  Hootie Girl was quite an inspiration.

Hugs to you too

 

Doris

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

You can ask for a copy of all your reports when they mention them to you.  I try now not to bother Medical Records, so everytime they mention a test or this or that, I say "May I have a copy" and in minutes it's in my hands.

You need that talc procedure Jamie or a drain where you can pump it out yourself.  Like those tubes they put in to drain out body fluid after a masectomy.  This way you don't have to go through this over and over.

Ask how often they have had a leaks in the type of port they put in you.  They propably won't give you an answer unless you meet up with a very honest person.  

I am so sorry that you are on such a rough journey.  Hootie Girl was quite an inspiration.

Hugs to you too

 

Doris

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Hi Jamie:

I was on Halavan for around 9 months.  That seems to be the length of time each chemo is effective at reducing or stabilizing my liver mets.  I didn't much in side effects until I was getting to the end of the effective treatment time.  I quickly developed severe neuropathy and had to be taken off the drug.  I sure hope you don't experience this same thing.  If you do, be sure to bring this to the attention of your onc.  I recall in a previous post that you developed neuropathy from either Ixempra or Xeloda.  I have had one treatment of Ixempra and I have to say this is the worst chemo I have taken.  I feel really bad for one full week.....muscle/bone pain, contipation, hand/foot syndrome, loss of taste, etc.  I especially do not like the Benedryl that is used as a pre-med that leaves me feeling sick to my stomach and drunk.  I get my next dose next week.  As long as it is working, I will continue because I, like you and so many of our pink sisters, still have things to do and do enjoy living.

I am thinking of you and hoping for the BEST!  Hoping you have a very Happy Mother's Day!!

(((Hugs))),

Debbie

 

 

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

If it gets worse with the Halaven I will definitely let them know because I don't think I can handle it getting worse.  Thank you for sharing your experience with the drug.  So far the worse side effect is constipation.  I hope Ixempra works for you.  I thought it was almost as difficult as Adriamycin (maybe worse).  I remember breaking out in bumps all over my head and it took them a long time to heal.  I also got a bad case of oral thrush in my mouth.  My onc lowered the dose once or twice and it got a little easier to tolerate.  I was only on it for about five months because my cancer got worse while on it.  Unfortunately it was while on Xeloda alone that it spread to my liver.

I had another Thorcentesis this afternoon.  They drained 1700 ml this time.  I felt like a pin cushion.  They couldn't use the port because of the leak in the tube so it took four people trying two times each before they finally got an IV to work.  At least I was able to convince them to let me go home after just two hours in recovery instead of the usual four hours.  I hope I can do as Doris has suggested and get something put in that I can drain myself because I can't keep doing this.  I don't understand how I went from never having this done before to suddenly I've had it done three times in less than one month.  I told the radiologist who did the procedure that I should have a "frequent fluid card".  He promised to check into that.  Those people are so nice which at least makes it bearable.  I sure hope I can sleep tonight.  I had steroids before chemo yesterday and I didn't get much sleep.  I'm sure you know what I mean.

I wish you the very best and hope you have a wonderful Mother's Day! 

HUGS!!!

Jamie  

camul's picture
camul
Posts: 2004
Joined: Dec 2010

Hope the Halaven works well for you. That was a hard one for me from the beginning. I was on it for aboutn6 months but it was causing neuological issue, like falling over and losing days at a time. Had to get a wheel chair. Kept telling him something was wrong so they dod an mri on my brain which showed changes in the white matter in my brain and increased non cancerous lesonswhichnwere consistant with parkinsons which my endocrinologist suggested about 2 years prior and ran some tests right befor the mets diagnosis, and this was the start of my neuropothy. But after being back on this Adiamycin I dont know which is worse. I agree This is my second time on it and it isnt any better the second time around.
Amazing how well some do on one chemo and the next cant to
I ony hope it gets better for you.
Hugs and prayers,
Carollerate it all

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

Hey Girl you are a fighter!!! The liver can regenerate.....our bodies can cure themselves too. Help the chemo clear your body..get alkaline and stay away from sugar. Exercise is known to help in a big way!!! Fight and you will win!!!!

I will pray for your continued strength and positivity because that works!!!!

 

xoxoxo

Patrice

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Oh, Jamie, I just wish I could make it better for you and others who are struggling with awful treatment side effects.   Hootie Girl was indeed an inspiration.  Also remember Chen.  She appears to have finally beaten the beast into remission after struggling for a very long time. 

I'm continuing to send prayers and good mojo to you and others.

Suzanne

 

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